Referrals for Possible Enrollment
Study Criteria
Parent(s) or guardian(s) of a child aged 1 month* through 18 years who has died suddenly and unexpectedly where 1) the preliminary cause of death is undetermined and the brain has been retained OR 2) the final cause of death is unexplained or unclear occurring in the United States or Internationally with medical records in English.
The study excludes cases of apparent suicide, apparent homicide or accident where the external cause was the obvious and only reason for death.
This study is approved by the NYU Langone Health’s Institutional Review Board (i14-01061). For any questions regarding whether a specific case satisfies enrollment criteria or not, please contact us.
In 2024, we began to include the investigation of videos of febrile seizures in living children. For those interested in sharing this information about your child to better help us understand febrile seizures, please click here.
*If the child is less than 11 months and sleep related, the investigation must show a safe sleep environment and minimal risk of asphyxia.
How to Refer A Case
Families can refer themselves for enrollment by contacting us through the Contact Us page.
Professionals interested in referring a bereaved family to the SUDCRRC should confirm research interest with the parents/legal guardians in advance of referral. Upon receiving the next of kin contact information and confirming inclusion criteria, the study team will contact the family and obtain written informed consent for study enrollment.
Pathologists and other professionals are not responsible for consenting families for enrollment. The study team will complete all aspects of the consenting process.
Records and Specimens for Study Participation
The study will provide all shipping supplies, prepaid shipping labels, and reimbursements for costs incurred to provide the below:
- Medical records
- Autopsy report, death scene investigation report and photos, and ancillary study reports
- Biospecimens (including blood, vitreous fluids, tissue/organ or blood spot cards)
- Viable Genetic Sample: Fresh liver specimen in our genetic kit which preserves DNA and RNA, whole blood (ideally in EDTA), or extracted DNA. If none of these are available, consult with study team member to address.
- Histology slides (H&E stained)
- X-rays and photographs
- Whole brain fixed in formalin for 2 weeks (if retained and available)
Death Investigation agencies can obtain study related shipping kits with prepaid shipping labels prior to case referral. These include CNS kits, genetic specimen kits, slide shipping kits, dry ice kits, and insulated shipping kits. To request free supplies, Contact Us.
Results Returned To Medical Examiner/Coroner And Additional Resources
- Whole exome sequencing (>20k genes) report with genetic counseling and referrals for families as clinically indicated
- SUDCRRC Multidisciplinary Case Review Report
NYU Langone Health
Comprehensive Epilepsy Center
223 E 34th St, Ground Floor
New York, NY 10016
The SUDCRRC is approved by the NYU Langone Health’s Institutional Review Board (i14-01061).